BobbiW's Journey:

Patient: Bile Duct (Cholangiocarcinoma) Cancer

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 62

  1. 1
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Diagnosed

    Oh No

    In Aug. 2012, after my husband prodding me, I finally went to our primary physician thinking I was developing an ulcer because of stomach irritation just above my rib cage. Zantac didn't work, but Tums seemed to help. After blood tests, physical exam, and the normal office visit things, the next day my PA called and said that I should go in for a CT scan for diagnosis. Fortunately, I was able to get this scheduled for the next day. CT procedure went well; results came back the following day -- what a kick in the face!! The report showed signs of the "C" word with nodules and other masses through my abdominal area, as well as a small mass in my lower left lung. Initial diagnosis was abdemocarcinoma without primary. Mestastatic disease (CANCER!) involving liver, upper abdomen, lungs, peritoneal lymph nodes, and carcinomatosis! We and the doctors are stunned, to say the least! According to the doctors, they can't believe it -- all this for an otherwise very healthy person!! As one can imagine -- our car ride home from the doctor's appointment contained lots and lots of *&$@ words!! UGH! I was then referred to the Humphrey Cancer Center to meet with an oncologist, Dr. Mehrotra. An appointment was arranged for the following week.

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  2. 2
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Pain medicine

    Drug or Chemo Therapy

    Hydrocodone/APAP 5-325, now upped to 10-325 every 4 hours as needed. I'm now taking 1 tablet every 7-9 hours!!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  3. 3
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Initially Cisplatin and Gemzar used for 3 cycles of chemo treatment (Day 1 in cycle - Cisplatin & Gemzar, Day 8 in cycle - Gemzar, then off chemo for Days 9-21). The cocktail was reduced by approx. 25% due to side effects for 4th cycle. Because of CBCs out of whack and side effects not improving, now only Gemzar (currently in Cycle 5).

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Eating problems (anorexia)

    Side Effects

    Appetite stinks! I try to consume approx. 1,000 calories or more per day. Not very successful getting that many calories in. My daily cravings and what tastes good change constantly.

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  5. 5
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Bleeding

    Side Effects

    Nose bleeds after the Gemzar chemo treatment due to low platelet counts. Had platelet infusion one time. Not sure if it's the Cisplatin or Gemzar that cause this. This occurs at approx. 1-week after the 2nd chemo treatment of Gemzar. I've suffered from severe nose bleeds, bringing me to the ER for nose packing and a platelet infusion. My oncologist ordered Simple Saline to prevent the nose bleeds, which seems to help. This past Thurs. (6-days ago), I had my Gemzar chemo and, with tomorrow being the 7th day following it, I'm curious if this will come again (I am starting to bruise on my arms). Today is Friday and -- NO bleeding!! Yay!! Errrr -- today is Sunday and I'm seeing more bruising on my arms. :(

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  6. 6
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Fatigue (tiredness)

    Side Effects

    Extremely tired and weak - particularly in the legs as they are swollen and have been since treatment started in early-Sept., although I keep my legs elevated as much as possible during the day, per doctor's orders.

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  7. 7
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Constipation

    Side Effects

    Now using Colace stool softeners, which seem to help some.....just having to get up and "go" nearly every 1/2 hour. UGH!!!

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  8. 8
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Fluid in the abdomen (ascites)

    Side Effects

    Endured paracentesis procedure twice - last time (1 week ago) was brutal with stomach cramps afterwards.

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  9. 9
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Taste change/loss

    Side Effects

    UGH without a doubt!! My tastes and cravings change almost hourly. This makes it difficult for my husband to prepare things for me to eat.

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  10. 10
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Swelling (edema)

    Side Effects

    The swelling in my legs (from toes up to my thighs), has been a continuous issue since I began treatment. Initially, only 1 leg was affected, but it has been both legs for the past several weeks. Because of this, my oncologist instructed me to keep my legs elevated as much as possible during the day (but I'm finding it more difficult to find a "comfy" spot to lounge on the couch or oversize chair because of my now "boney butt"). My oncologist also instructed me to keep my foot and calf areas wrapped in an "Ace" bandage during the day, but my skin is getting some raw from that, but does help some with the swelling.

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  11. 11
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Low platelet counts (thrombocytopenia)

    Side Effects

    This occurs at approx. 1-week after the 2nd chemo treatment of Gemzar. I've suffered from severe nose bleeds, bringing me to the ER for nose packing and a platelet infusion. My oncologist ordered Simple Saline to prevent the nose bleeds, which seems to help. This past Thurs. (6-days ago), I had my Gemzar chemo and, with tomorrow being the 7th day following it, I'm curious if this will come again (I am starting to bruise on my arms).

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  12. 12
    • BobbiW
    • Experience with Bile Duct (Cholangiocar...
    almost 5 years ago
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    Home care

    Other Care

    We met yesterday with a Home Care Assessor. The Home Health Care nurse will be coming by once a week to do vitals, etc. They are also going to arrange for a physical therapist to come by to do an assessment so I can get rid of the weakness. Let's cross our fingers!! The PT visited yesterday to do an assessment and make suggestions for exercises and home medical equipment. Unfortunately, we couldn't finish the full assessment of how I'm getting around the house because I became too tired. We've been provided/loaned from Goodwill-Easter Seals, which she thought was great and we've put to good use. She brought along a bed rail to try for a night or two to see if it helps turning from side-to side and getting out of bed -- really helps so hubby went and bought one for my use. He also bought a 4" thick cushion (another PT suggestion) to ease my back pain when I'm sitting, but the jury is out on that one and I'll have to wait and see. PT also put in an order today for a wheelchair that we can customize to my needs, rather than have to use those that happen to be available at a store or the oncology clinic. That I KNOW we'll use so that I can get out of the house some, rather than just back and forth to the oncologist or treatments. PT will return Friday to, hopefully, complete the assessment (I have chemo treatment tomorrow so we'll have to see on completing it..... Home Health Care nurse also came yesterday -- all seems good medically! She will come by once a week. Hoping things stay good, but tomorrow's oncology dr. meeting and treatment will tell for sure.

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